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Jake & Josh: A happier Sept. 11 anniversary

Family and friends,

As the world mourns a tragic anniversary Wednesday, Lori and I would like to offer another, more-pleasant reason for reflection this Sept. 11: The 4-month birthday of Jake & Josh. (Their due date, by the way, was last Tuesday, Sept. 3)

By pointing out the coincidental overlapping of the Sept. 11th commemorations, we in no way mean to trivialize what happened last year. Our hope is simply to provide an uplifting thought on a day that will probably be lacking them. The timing also is great for those celebrating the Jewish New Year and the upcoming Yom Kippur because the boys' progress is proof positive that our prayers are being answered.

The latest news on the boys is very encouraging. Jake had his bowel re-attached on Friday and is recovering nicely. Josh has overcome a slow couple of weeks and is making great progress on breathing and feeding. They probably will be pretty close to even once Jake is back to full strength.

Best of all, we've had nothing but good news in our three biggest areas of concern: the eyes, ears and lungs. Once Jake is OK again, the final hurdles will be to keep reducing their oxygen requirements and to keep boosting the amount of food they can take on their own. Then, they can come home.

There's no way of predicting how long those last few steps will take, but it doesn't matter. It's certainly worth the wait. Doctors are estimating about a month, although we first heard the "month away"
prediction on Aug. 10 - exactly a month ago today.

For those interested in more details, read on below. For those who want to go straight to the photos, the link is:

** The operation
Jake's surgery was last Friday and the doctor said he was "very, very pleased." Jake now has a scar on the right side of his tummy that's in the shape of "a lazy `s,'" as the doctor described it. It was done at that angle to avoid removing the bellybutton, which apparently is the typical way this procedure is done. Jake now has 14 staples helping the wound close; that's nearly one for each of the 16 weeks he was detached. He's been moved to a different crib and had been on the ventilator until today (Wednesday). The nurse last night saw a small indication that his plumbing is working, but we should know more in a few days when he goes back on breast milk.

** Feeds
Before the operation, Jake was getting his milk straight from Mommy and from a bottle. Josh has started doing both, too. Both have learned to latch pretty good, which is a concern with all infants. Their problem is learning to coordinate breathing with feeding. This is especially a problem when taking from the bottle. They tend to guzzle as if they're college kids hanging around a keg. And, like those inexperienced drinkers, it causes the boys problems. The first time each of us gave them bottles was a very emotional experience. It was the kind of parent-baby exchange that we'd unconsciously waited more than 100 days to have, and when we did it, it got our minds racing back to the days when we thought we might never get to enjoy such simple tasks. Josh is getting one bottle and one time with Mommy each day. Jake was getting a combined total of three before his surgery. Feedings will likely be their final hurdle to clear. They've got to take eight bottles a day before they can go home.
However much they're getting now is certainly working fine. Josh is up to 6 pounds, 11 ounces and Jake is right at 6 pounds. They're both about 18 or 19 inches. All that is up from 1 pound, 2 ounces, and 11 inches at birth.

** Lungs
Now that Jake is back off the ventilator, both are getting supplemental oxygen wafted into their nose, like adults get when they're hospitalized and need oxygen. This is far less invasive than the previous setup. One doctor said the difference is a gentle breeze vs. sticking your head out the window while driving 80 mph.  Josh had trouble making the leap to the nasal prongs. He was given a low dose of steroids to help give him the final boost and they seem to have done the trick. Getting steroids was considered a big negative before because of potential side effects, but that wasn't a concern now that he's much bigger and healthier. Should they have to go home on oxygen, it would be given this way. We are relatively optimistic that they'll be able to avoid that, although considering everything else it wouldn't be so terrible.

** Holding
The best part of their improved lungs is that they're not tethered to their beds any more. We can hold them virtually any time we want - and Josh certainly wants it all the time. He loves it so much that one exasperated nurse put him in a baby swing one night. He was so happy that he was laughing! We can't wait to see that. Another cool trick he pulled while we weren't there was lifting his head and turning from side to side to check out what was going on. That, too, left him smiling. Best of all, we've been able to let others enjoy the thrill of holding them. All four grandparents, two uncles and an aunt already have gotten into the act. We've each also gotten to hold them both at the same time. It was as great as it sounds, although it's highly impractical, so we haven't done it again. Still, it gave new meaning to the old song, "I've got the whole world in my hands."

** Eyes/ears
Josh continues to have wonderful vision, while Jake is pretty good. On a scale of 0 (best) to 5 (worst), Josh is near zero in both eyes and Jake is at 2. He had been close to 3 after one visit, but the doctor checked back a week later and - as the doctor expected - the problem area corrected itself. They will still be checked regularly, but it's highly unlikely that either will need surgery. Their ear exams were done somewhat out of the blue. All that matters, though, is that they passed them.

** The NICU
We had a feeling Josh was going to do fine on the ear exam because of how well he responds to his mobile. Playing that music really soothes him. He also likes to look at it; in fact, he seems to enjoy looking at it more when it's still than when it's in motion. On Day 100, the boys were moved from the area they'd always been in to what's called the "isolation room." This was made for babies that are essentially quarantined, but it's hardly ever used for that. Instead, it's a larger, quieter area where they can care for 2-3 babies at once. The boys shared the room with another baby until Jake's surgery; now we have it to ourselves. Once Jake goes back in the same crib as Josh, we'll probably get another neighbor. When they are reunited, it will be in a new, larger crib. They were able to get us a double-sized one on Friday, the day of Jake's surgery. Because the procedure ended so quickly, there was a mad dash to get Josh transferred before Jake was rolled back in. Seeing the bigger bed and the baby swing are like eye candy when we walk in. It's such a nicer sight than ventilators and other contraptions. But the sweetest sight is seeing our big boys dressed up in outfits, looking like real babies. (As you'll see in the attached pictures)

As always, Zachary has provided us with a great ending.

Lori was putting him in Jaime's car one morning for the ride to school and in saying goodbye she told him to have fun at school.

"Have fun with Jake and Josh," he said gleefully.

Lori and Jaime